My wonderful Daughters

After being married/divorced twice and in effect having lived with a different woman every decade of my life. To say my life is complicated would be an under statement.

In total I have 5 daughters and 2 sons who I have direct long term involvement in, everyone of them I treat as my own, only because it is one of my principles of life, however Morgan & Grace are & will always be the Center of my world not because they are mine by blood but because I fully understand emotionally & legally my condition has biggest effect on them.

Morgan takes very little interest in my condition and in fact once asked me to cover my scar before swimming (which I did) I just think she blocks out what should have or could happen, I am healthy & my condition on face of it doesn't effect my life to extent she sees it, I have never actually lived with Morgan so I suppose all she has ever seen is my absolute joy & love of being with her, I will never try to dispel her belief my life is easy or straight forward to her,

Grace is different she spends all her English half terms with me in Scotland with Lorna, & Kyle now along with more and more of her summers. She talks openly about "Barry my device" and how she used to listen to my old wild heart rhythms, she wants to see & meet the people within NHS Scotland I say are so great. She has always asked me questions on my condition & treatment.

If you have read my blogs before you will realise how I feel my heart condition changed my life in a positive way despite the obvious drawbacks but the elephant in the room is and always will be they think my condition may be heredity.

As Lorna too has condition only 2 of my children from 2nd marriage are not tested regularly. Every time one is tested the deep fears come over us. It is easy to enjoy our life's because we understand how lucky we are to wake everyday so make most of it but easily our biggest fear is for our children not us.

There was absolutely no history of heart failure or sudden death in either of my or Lorna's families yet both my brothers got irregular heart rates at same age as me but due to testing unlike me no sign of dilated cardiomyopathy, their children are now regularly tested.

You would think the fact our families are tested so regularly & the advances in heart care is so great now would help ease our biggest fear but it doesn't.

So my condition has made me love & think of Morgan & Grace differently to my other children & so much more than if I didn't have heart failure, I fought to return to work to ensure financially they are forever ok, I push my physical boundaries like End2End so they have happy memorable memories of me. I plan my whole life around them so they only see the good aspects of my condition although Grace is seeing the bad bits more & more now which I absolutely hate.

When I was 1st diagnosed the thinking was woman with DCM should not have children but like so many taboos since then this has now been softened. My biggest regret of my condition is even once I am gone my DCM will haunt my daughters for ever even through their children.

So our heart failure is not just about myself & Lorna enjoying life it is now part of our families future forever & we just hope that is all it is. Hopefully we have given our children a vision of how to enjoy life without them or future generations actually really experiencing why we live the way we do.

Wonderfully shy but strong Gail

My husband and I came back from a fantastic two weeks holiday in Greece in September 2010. I hadn't been feeling well prior to the holiday and became worse whilst we were there, so I promised my husband I would go to see my GP the next day. He gave me a kiss the next morning and told me to let him know how I got on at the doctors; the next time he saw me i was in resus, plugged in to all sorts of machinery and with an oxygen mask on. His face said it all when he saw me and they explained to him that I had had a cardiac arrest upon arrival and they had had to defibrillate me. 

That was the start of the roller coaster that was to be our lives. We were told I wouldn't survive the night without a temporary pacemaker and I thought 'hang on, this is me your talking about?'  I was told I had something called dilated cardiomyopathy and heart failure. 

I had never failed at anything in my life, and I certainly wasn't going to now so I became a survivor and not a victim. I have never once said 'why me' because why shouldn't it be me. I get on with my life as normally as I possibly can. Yes, I have horrible days when I can barely get out of bed, but I don't let DCM control me, I control it. 

I have met the most wonderful heart friends and they have helped me through my darkest days and laughed with me on my good days. 

All in all life is good and I make sure I live life to the full, as much as I can.

Do I live a healthy life?

When diagnosed with heart failure immediately you review your lifestyle before doctors tell you to, would be stupid not to and for many they are told must change lifestyle dramatically. Looking back I wasn't apart from alcohol but that was quickly ruled out as a trigger for my condition.

After nearly 5 weeks of little excercise since ending my cycle I need to refocus on excercise as a means of controlling not becoming symptomatic along with general lifestyle through a winter with long periods of tiredness, fatigue or mind fog looming. Have noticed more mornings struggling to get out of bed & become active.

So after 15 days of cycling, 5 weeks on I feel bloated & unfit with winter approaching. Meaning as a heart failure patient time to review my life style.

Use it or lose it - I need to excercise and as much I enjoy swimming it isn't active enough so I know I need to cycle home once or twice a week , in total I must excercise 4 or 5 times a week for between 1 or 2 hours. I don't mind saying my head is finding excuse after excuse not to excercise but in reality the only barrier is me & my mind.

Eating - I actually don't eat that much unhealthy food, Lorna cooks healthily for us but I do eat a vast amount when I do eat, I lost nearly 4 stone with my John O'Groats to lands end cycle so need to keep it off, I will look to 3 meals a day with smaller amounts. Again I think I use my tablets/device as an excuse. Clearly they dont help but eating amount is the issue even if healthy.

Weather- I will have my flu Jab but I can't remember the last time I was actually wiped out by a virus but the cold does drag me down slowly over time. I definitely think Lorna & I need to plan in winter sun to brake the constant cold dragging us down, in retirement long winter sun breaks will be a must that isn't feasible presently. I would say the weather is biggest impact on my condition & general well being.

Drink pure- haha the ultimate heart failure question so Yes I drink at least 1.5ltrs of water a day but that isn't the drink that causes the biggest debate. I am a alcohol binge drinker & would scare people with how much I can drink in one binge quickly.. So if asking if I live healthily the above 3 before Drink pure show I do to a high level but I fully accept it is wiped out by drinking even if only 3 times a months but I don't care, we enjoy it. I will never give it up or hide it from fellow patients.

So the biggest thing facing a heart patient is you could do 95% of how to live well and it wouldn't matter unless you did it 100%, I know some do & that is their choice but I can't or ever will be 100% committed to living healthily. I enjoy life, food & Lorna's cooking too much,

I enjoy getting very drunk so I have to admit I don't overall live that healthily as a heart patient  but I am happy with the balance I strike which has served me well Up to now.

John

A patients mother's view

Now that 4 patients have added blogs to highlight the issues facing us and the positive futures those patients believe they can have, I got this message from Julie who runs the Cheshire cardiomyopathyUk support group.

I finally met Julie and her DCM patient daughter Jenny during my cycle & they both highlight what a wonderful journey my life is now.

Julie strives to support patients, raise funds and awareness with Jenny pushing ahead with university education trying to live a full & normal life hopefully both will add blogs in future.

I wanted to post this message to highlight more positivity from different angles to just patients.

Julie 

"I have been busy too with our support group and have actually had consultants emailing me offering to come and give talks to our group. Got me thinking about how actually our doctors are encouraging and supporting our efforts to find out accurate information about the condition and would actually rather have patients who take control and give them real feed back. 

Donna being invited to give a patient perspective is exactly what Jenny has been asked to do at a nursing conference in London next month. Doctors are listening right now - they want to know the reality and they are looking hard at providing the not just the right medications but the right support too. I have hope for the future."

Thank you Julie

Claire's story

So, John has asked me to do a blog about my life with heart failure….my initial thoughts were ‘what do I put’?? / ‘I don’t like talking about myself’…..

 

Well, for starters, I can tell you….failure is not an option for me!!

I was diagnosed at 28, and was placed on the transplant list….there was no way at 28, with 3 gorgeous boys (1 of which was ONE day old at the time I was told) that I was having that transplant….at that point, my outlook was ‘this will not control me, it will not dictate how I run my life, and it certainly won’t take me from my kids….I can’t change what’s happened, it just has, accept it, deal with it and get on with it…if you have to pop a few tablets every day to enjoy bringing up your gorgeous boys Claire - then sobeit’….to this day, I still have that positive outlook….

Don’t get me wrong, I do suffer, and I do have to listen to my body….but, I have a new friend to help me through, my ‘Percy the Pacemaker’….we are relatively new ‘friends’, but he has given me a new outlook….now is MY time….2 of my boys are now young men with their own lives, and my 10 year old will soon be going to high school and making new friends etc, thus not needing mum as much….so, Claire – do what YOU want now!!  So I have taken the plunge, and am beginning to fulfil my career….I am only 38, so young enough to build a ‘career’….so I have just registered to sit my mortgage advising exams….a 12 month gruelling study and exam process, but I am ready and I will NOT let heart failure stop my ambition….

A Patients knowledge

I continually ask those on my journey to contribute to my blog & all say the same things when I ask

1. Never done it before

2. Don't know what to write about

3. What shall I write about?

But once they have done it like Donna below they all say how easy it was and "is it ok?" if I have asked you to do a blog for me it is because I feel somebody like myself loves to read how others cope & if you look you have something we patients can take from it. Donna added she enjoyed it as most do.

Donna

I never thought that I would ever be asked to do something like speak to medical students about a heart condition but I did just that on Thursday 15^th October. I arrived at the health centre and was shouted into the Gp’s surgery where I was met with the gp and 3 3^rd year medical students. 

I was introduced to them and asked if I would tell them my hf journey, how I was diagnosed and how it has changed my life. At first I thought they are 3^rd years they will know everything there is to know about hf but as I started to tell them about my diagnosis and hf I realised that actually they didn’t know a lot about it. 

After telling them about my diagnosis and how the hf has changed me that I   have  became the “new me”.  I felt really good and found that I do know more about hf than I thought. I was glad that I was asked to do this and was really surprised at how interested the medical students were about the subject of heart failure. If I was asked to do it again would I? yes I think I would

John

When I read this I really enjoyed it as showed so much about how patients are changing, becoming more aware through not medical people but fellow patients probably through social media and their own research, what I also think it shows is Donna's need for confidence & belief she knows more about her condition than anybody, it is her heart failure, her life. Her choices. She is capable of explaining her condition in detail but not I suspect to challenge yet what doctors tell her.

My doctors I believe never tell me but rather I take their advice and tweak/challenge it to see how it fits into my life and I know Lorna does too, My doctors are probably the biggest difference to how others are treated because they have always engaged with me and talks like Donna's hopefully will show the latest generation of NHS workers coming through it is a partnership, 2 way and not dictatorship. 

Hopefully Donna will do another soon.

A Journey

I am keen on quotes and positive images so much to the extent that they annoy Lorna at times, I read up on positive thinking so much that they all now basically say the same but just in a different way. My favourite is the one about your inner chimp V your inner human and I can tell you my inner chump is a raving loony and my life is littered with times my chimp sadly won.

Before diagnose the one life term I never fully understood was the term "on a journey" it sounded like some sort of hippy thinking but in reality my life before diagnose looking back was a sequence of wonderful times with no real goal or point, I lived a very charmed life that after every disaster I somehow recovered to something better. I know I am lucky for my recover from those 1st days unable to walk down corridor at hospital.

I was the most selfish person who has always been somehow well loved but I probably hurt everybody close to me at some point but was mostly always forgiven by those closest to me so if I had died as stastically at that time I should have I have no illusions to how I would have Been described by those I left behind. 

So then the Journey starts, at the start you look around you to those who message & visit you in hospital because they care & you think why do they love me so much, you are told the bad news of how your life will change & you deny it as some sort of mistake. You think if you died last week what have you left behind. At that point you decide if your life is a bus crash is it a write off or just minor damage.

I love the idea of the my life now being like a bus journey, many get on and many get off, you stop at the stops where you wonder who is getting on & off now, have they been the interesting lovely passenger or the annoying loud drunken smelly one, ultimately as driver I get to choose who stays on this bus. you reach the terminus (goal) and you just start again on another bus journey, As driver you can decide to go on same road or take your bus on a magical mystery tour.

Every so often my bus goes off the road due to breakdown, for routine maintaince or maybe full MOT but so far it has always got back on the road.

I drive a very full bus that has done a lot of miles, it is old & bettered but an engine that somehow keeps going but I will drive this bus at full speed until the engine gives up.

What i find amazing is it took my diagnose to realise life is basically a journey & despite knowing about "on a journey" I just didn't get it. This blog makes perfect sense to me but maybe only me, if you are on my bus I try to tell you often what you as a passenger mean to me. My bus journey will end one day but what s journey it has been & nobody who made this journey special will not know that.

The journey continues and where will my bus stop next and who is getting on & off

Charity work

As I finalise my total money raised from my John O'Groats to Lands end cycle which is to be split between Oliver & his family along with Pumping Marvellous who have been such a huge part of my heart journey.  I have taken time to reflect on what I learned about raising money for charities & charity work in general.

Looking back I wish I had only raised money for either pumping Marvellous or Oliver & his family to send them on a holiday. Now after expenses We should have around £600 for each. It would have made it easier if I used Justgiving for one cause & not Gofundme as I ended up raising over £1400 for expenses especially hotels & fuel from mainly Barclay medical practice so in total I raised over £3000. Not bad considering I announced it 3 weeks before but will never do it that way again.

So as I look forward I have taken decision to continue raising money for Oliver with my final event for him being the great Scottish swim where I will swim 5k in Loch Lomand, hopefully before that I can have bag pack at work and maybe some other fundraisers.

However I realise that I don't do as much charity work as I should. Not because I don't want to but is strange having a chronic illness and being able to raise awareness of it by continuing working & physical achievements that actually leaves little time to be more active within a charity.

On Monday at work I thanked my fellow managers for support and singled out Jayne for her effort, she sat quietly behind me saying nothing. I asked Jayne today how much she had raised as store charity person and she had no idea but i tell you a lot more than I have for mine.

Julie from cardiomyopathUk posted this week about a local child minding charity her family had supported for 20 yrs that had been took over so the elderly founders surprised her with donation to her choice charity because of that superb support.

Sam at Pumping Marvellous who no doubt will tell me off for writing this but I see how heart failure effects her but she still drives herself to produce awesome images for awareness including my End2End stuff.

What these 3 have in common is they do charity not for Ego, publicity or because they want something back, they do it because they care for people.i am so amazed at their efforts not only to do what they do but be so shy about being thanked for doing it.

I so get the joke now "don't like to talk about my charity work" because so many & probably large majority do but In my opinion do it for something other than kindness. I might even count myself in this if being honest.

So I joined community charity group at work, I will do small traditional events to raise money for Oliver with Jayne's input no doubt Hopefully my exploits open new contacts to promote these events.

I still want more to know that heart failure isn't the end, I want to contact & collate more stories from around the world who show & back that belief up. I am inspired by them & others so I just want to give something back but not from the front because Lorna & my life doesn't need it or could cope with it but we care for others but not in the way Jayne, Julie & Sam above do, I definitely am too selfish.

So finally  I like doing charity work & will continue but I don't like to talk about it.

     

Doctor Nick Goodfield

I have described before my visits to my Cardiologist Nick Goodfield, who acknowledges his own extreme weight easily, I find he has an unique different style of his own like most good medical people, in 8 years I have found no nurse or health service worker who doesn't like him or talk highly of him. Of course he has an ego and arrogance which in some cardiologist  I find annoying but in me he  has proved that he can back it up with success in someone another Cardiolugist didn't write off but forecast a not too bright future.

Lorna has been with me for almost all of my meetings with him and she understands it so much better than me, she is the one who has asked the questions, she is the one who told him that forget my "am ok" to every question & told him the truth.

I liked him the 1st time I met him and some of his comments are with me all the time and core to my desire to make the most of life despite my heart failure.

On my insurance company trying to not pay my critical illness insurance after diagnose  "really just leave that to me I will sort them out" a month later they paid out.

How long will I live?. "No idea look at me you will probably out live me"

Can I come off my Drugs "well you could but if stay on them you will probably die suddenly but off them it could be long & slow decline, know which one I would choose"

What are options if this doesn't work, "straight to transplant"

Can I return to work? "Only you know how you feel, you want to return I will say you can return"

"I find heart patients fall into 2 groups those that don't do anything and those that do too much, never seen anybody get it right"

On my swimming, cycling & Running training "all good just don't do them together" I had just completed London triathlon.

I don't have a relationship as such with him, I know nothing of his life, he asks I answer, I ask he sometimes ignores me as he studies my file but last week when visiting my dad in unit next to Stobhill I popped up to leave a note for him at his receptiost

"8 years ago my 1st cardiogist told me lucky if I return to work or excercised in any real way. On Saturday I finished in 14 days John O'Groats to lands end cycle, thank you for everything you have been amazing"

When I walked in to see him yesterday for my echo he asked had I recovered & thank you for note. He had a trainee with him and I so wish Lorna was with me to listen, he knew my story in detail, he spoke of the reasoning behind his rather unique decisions on me. I understand now how Frankenstein loved his creator, this man had given me an amazing 8 years and I could never thank him enough.

I so want to ask him for selfie with him for blog but I am scared to like a child to a parent so I don't. I love the NHS it is without doubt the greatest health service in the world but so much of your care comes down to luck, meeting the right people at right time, 

In every aspect of my life I look round and see how lucky I have been, Lorna, my GP,  my Cardiolugist to my current manager at work. I have been so lucky and I so understand that, yes I have fought this condition every day but I haven't done it alone I wouldnt have achieved anything without people like Dr goodfield. 

Everyday

I was reminded this week of the changes my condition brought to my personality & life, as always a mixture of good & bad.

"You either let cardiomyopathy rule your life or you rule it" is a phrase I have heard many times but which one am I?

It is not easy to describe how my condition has changed my personality, like everything to do with my condition. People simply cannot see it. I am more emotional which is a good thing, I react to situations in stupid non rational ways, I get paranoid, I let things eat away at me. I want to care about things but the questions that swirls round my head is "did you live for this shit" "is it worth it" obviously not good.

After 8 years I have learned to hide it even more &  I deal with it better internally, The low points don't happen more often now but I am getting tired of them, I am getting tired of having to balance my thinking out, I am tired of putting myself in situations that cause reactions. I am tired of doing things that no longer matter to me no matter how important they have been the last 8 years.

Life must have a point or what is point of living?

8 years ago I didn't think I would celebrate my 48th birthday I honestly didn't so I didn't plan this far ahead.

So here I am at about to celebrate my 48th birthday so what do I do now? I actually believe I may live for longer than I truly expected so how do I find the new point of living?

I will find it because I need to find it, I have too much good around me with Lorna, family & friends who again showed during my last adventure how lucky I am, in them I find it because they are at root of everything.

So surpringly I must declare cardiomyopathy does control my life because the irony is 8 years ago I didn't  think I would see my 48th birthday but as I plan my longer future maybe I won't see my 49th. I can't control that. 

But it will be another good year I can control & guarantee you that.